Alopecia World
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Here we are a year later and just plain fed up
Well here I am a year later after I discovered the very first bald spot......I still have hair but holy cow not that much..... I have to say this is the most frustrating thing I have ever been through in my life.
I went into wigs in January because the delightful bald spots were becoming too big... I have I am not sure of the correct term but the Ophiasis pattern? The hairloss is all the bottom of my head and the side kind of like a turban effect. Well at least that is how it started and now well what is left above the three inches of hairloss around my head is starting to fall out too. The thing I find the most frustrating for me in my case is the blasted amount of time it is taking the hair to fall out. Be done with it already!!!! I don't have the guts yet to just go for the gusto and shave my head since I still have hair on top. I know I am going to be hanging on to every last strand of hair because I put that razor to my head. For the time being when I get home from work off comes the wig and what hair I have left is pinned up but NO ONE sees me outside of my husband and daughter.
I have been doing the Kenalog shots every six weeks. Well I have done them for two rounds of shots and whoopee....so you grow hair where the needles are given and the hair is baby fine. What the heck am I going to do with hair like that!!! I have seen better quality of hair in the furballs my cat coughs up......Unreal..... Then the delightful dents it leaves in your head really makes you feel attractive. It is bad enough I have cellulite on my butt but now my head looks like orange peel too! Dermatologists are just plain ignorant....Mine says losing hair on your head is one thing but losing eyebrows it the worst because you lose your expression. Thanks.....I REALLY needed that pointed out to me buddy!!!!!!!! As he is giving me the 30 shots in the head he is saying "Boy oh boy if we could bottle Alopecia we could make a fortune...as far as controlling where hair grows on your body etc in the beauty field...".......Just shut the heck up!!!!!! I am feeling like Phantom Of The Opera and this guy is talking about the beauty industry.......
The only thing I am looking forward to is getting a vacuum wig. That is the plan but the guts I still need to get up to shave the head to have one of those wigs......I have already been in contact with Debbie Fuller and you know that was the best thing I could do because there is hope for me. I will never be the bald chic walking down the street well at least not without plastic surgery to give me the features that I would need to carry the chrome dome. Hell if it had happened to my sister well she would be gorgeous bald but no it had to happen to me.......
Sorrryyyyyyy on a bit of a vent here. Just having a really poopy day........
On an up note...... My daughter who we adopted from China last year is now a Canadian citizen!
I went into wigs in January because the delightful bald spots were becoming too big... I have I am not sure of the correct term but the Ophiasis pattern? The hairloss is all the bottom of my head and the side kind of like a turban effect. Well at least that is how it started and now well what is left above the three inches of hairloss around my head is starting to fall out too. The thing I find the most frustrating for me in my case is the blasted amount of time it is taking the hair to fall out. Be done with it already!!!! I don't have the guts yet to just go for the gusto and shave my head since I still have hair on top. I know I am going to be hanging on to every last strand of hair because I put that razor to my head. For the time being when I get home from work off comes the wig and what hair I have left is pinned up but NO ONE sees me outside of my husband and daughter.
I have been doing the Kenalog shots every six weeks. Well I have done them for two rounds of shots and whoopee....so you grow hair where the needles are given and the hair is baby fine. What the heck am I going to do with hair like that!!! I have seen better quality of hair in the furballs my cat coughs up......Unreal..... Then the delightful dents it leaves in your head really makes you feel attractive. It is bad enough I have cellulite on my butt but now my head looks like orange peel too! Dermatologists are just plain ignorant....Mine says losing hair on your head is one thing but losing eyebrows it the worst because you lose your expression. Thanks.....I REALLY needed that pointed out to me buddy!!!!!!!! As he is giving me the 30 shots in the head he is saying "Boy oh boy if we could bottle Alopecia we could make a fortune...as far as controlling where hair grows on your body etc in the beauty field...".......Just shut the heck up!!!!!! I am feeling like Phantom Of The Opera and this guy is talking about the beauty industry.......
The only thing I am looking forward to is getting a vacuum wig. That is the plan but the guts I still need to get up to shave the head to have one of those wigs......I have already been in contact with Debbie Fuller and you know that was the best thing I could do because there is hope for me. I will never be the bald chic walking down the street well at least not without plastic surgery to give me the features that I would need to carry the chrome dome. Hell if it had happened to my sister well she would be gorgeous bald but no it had to happen to me.......
Sorrryyyyyyy on a bit of a vent here. Just having a really poopy day........
On an up note...... My daughter who we adopted from China last year is now a Canadian citizen!
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Comment by Tallgirl on April 10, 2009 at 12:00pm
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I stopped the injections years ago and feel healthier with no chemicals in my body or rude and emotionally clueless comments from doctors. I have never shaved my head, and buy cheaper synthetic wigs (1 a year, on birthday. Once I got 2!) so I have money for other things. I'm just me, have nice girlfriends, and have already had the marriage and kids...now enjoy being a grandma. Gave up on dating for now, because other things keep me busy. Do you keep yourself busy enough to forget about hair?
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Comment by Natalie on April 11, 2009 at 11:16am
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Lori! I absolutely know how you feel! I also have hair loss on the sides of my head and the entire back scalp, and it has been a real dilemma for me whether or not to shave it all off because the hair on the top seems so full and normal. And I also wish that it would just fall out already and make up it's mind! It's slowly been getting thinner and thinner for the last 6 months, and I've just about had enough already. So I've been in touch with the people from Freedom Wigs in Chicago and I have a consultation with her next week; I will be shaving my head then. I cannot wait to be able to LIVE again and feel like myself without worrying about going out on a windy day or pinning my hair up exactly so no spots are showing. And as far as dermatologists, well I might as well be getting shots from a chimpanzee! He is nice young doctor, but he clearly has no experience with alopecia and was never able to offer me any resources such as this website. After dealing with alopecia for 8 years I have finally found a place where I no longer feel like I am alone in this journey! It is such a relief to read a blog like yours and know that there are other people going through the same thing! You are very lucky to have such a wonderful sense of humor that I'm sure will help you get through :) Take care and feel free to talk to me anytime!
Cheers,
Natalie
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Comment by Lori M on April 11, 2009 at 3:29pm
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Hey Tallgirl,
Usually I am very busy with the little anklebiter....LOL..... Some days you just get up and look in the mirror and go...AHHHHHHHHHHHHHHHHHHHHHHH! Just for that split second. Little tired of sweeping up my own hair off of the bathroom floor every day..... I have sooooooo many wigs.....Like about 10 or so. The one I am wearing now is the cheapest but I adore it. I have it in several colors. I have about 5 others which I hate because of "helmet head"..... For me I camp in the summer and like to swim. I definitely don't want to do the bald thing at all. It just isn't me and you can't wear a synthetic wig swimming.... I am assuming it would float along side of me and no one needs to see that! That is why I would adore a vacuum wig.... For the most part I am coping and pretty much I tell everyone I have Alopecia so it is no secret at all. In fact now I am going to switch my wigs up. One day I am blonde....the next day brunette and even a firey redhead.......How many people with real hair can do that without burning their scalps or hair off!
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Comment by elle on April 11, 2009 at 3:35pm
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I know how you feel. The same with me. I'm debating when to shave my head too. When I read what you wrote about the doctor talking about the eyebrows I seriously cracked up laughing.
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Hey Natalie!
Holy cow it sounds like we are twins! It is wonderful to find someone who is in the same spot as you! Whoo-hoo! Yep are you dealing with Karin Peterik? I have seen the vacuum wigs and they are awesome! I had a chance to go and see Debbi Fuller who sells the wigs too. Amazing!!! It gave it me such reassurance you know..... I even know what color I will get as well....LOL....... Debbi and I keep in touch all the time. I keep telling her "nope no guts yet to shave the rest of the head.....Stay tuned...LOL"..... The time is coming because I am telling you that the hair is really starting to go now at the side near the top and at the back near the top. It is like my hairloss started from the based of my head all around and worked it's way up. Pretty soon I am going to just have the "Hitler Look" if that makes sense .....WITHOUT the mustache though! You know the little toupee on the very top of my head basically! YUCK......
ROFLMBO Chimpanzee!!!!! You know I think a monkey would have a much better bedside manner and hey you may even get a free banana out of it too! You are a hoot my dear!
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LOL Elle.... I know! I thought hoiy cow buddy are you freakin kidding me? It is right up there with telling someone who has had their leg amputated that they won't be able to RUN or dance.....All I could think of is apparently dermatologists think people who have Alopecia are stupid too so they have to point out the obvious to them! Hmmmmmm didn't realize my brain cells were in the follicles......Who knew....but then again I am losing them through my hair......
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Comment by Lee on April 13, 2009 at 12:56am
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You will love your vacuum wig!! It made me feel like me again...hope you love it as much as I love mine ; )
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Comment by Vanessa on April 30, 2009 at 7:35pm
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Your hair loss sounds just like the way mine happened - gradually and in the 'ophiasis' pattern. I tried the kenalog injections too, with little success and a huge dent in my skull!! I'm soooo glad the days of sweeping my hair up off the floor are done. It really is such a relief to have the losing done with! I didn't shave my head until the last minute, when I had very little hair left, but it was nice just to get it over with. I too would like a freedom wig, or else 'cyberhair', which sounds like it might not be as hot. Also, they claim you can sleep in the cyberhair. But oh - all of these wigs are so expensive, especially when I have already spent almost 5,000.00 on various human hair and synthetic wigs. At this point I am surprisingly accustomed to wearing them though. Doesn't bother me nearly as much as it used to.
After I lost the hair on my head I lost the rest of it too - eyebrows, eyelashes, everything. That was the hardest part - thought I'd look like a clown forever. But I've had great success with using make up for eyebrows. I've even had people ask me where I get my eyebrows plucked!! Currently my eyelashes are growing back and almost full again - hurray! I missed eyelashes the most as they are functional - make up could disguise their abscence pretty well too, but I always was getting stuff in my eyes. Alopecia - what a trip. All the best to you.
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